Call to develop specialist unit for intestinal failure

A dedicated unit to treat and rehabilitate patients with intestinal failure is urgently needed, according to the Irish Society for Clinical Nutrition and Metabolism (IrSPEN), which is to submit a plan to the HSE. The plan proposes the establishment of a new national specialist centre in St James’s Hospital, Dublin, with regional ‘spoke’ services – and would reduce avoidable deaths, infections, and complications among these patients.

The plan was presented at a recent national conference on nutrition in healthcare, organised by IrSPEN, and highlighted the ethical and legal responsibility of the HSE to reduce mortality among this small, but highly vulnerable group.

Intestinal failure is when patients are unable to eat or digest food or water and must receive total parenteral nutrition (TPN), which provides liquid nutrition through a catheter or needle inserted into a central vein in the chest – resulting in the need for highly specialised care.

Much of patients’ care can be managed at home, however, each year between 80 and 100 patients develop severe acute intestinal failure, which lasts for more than 28 days and hospital admission is required. Speaking at the conference, Consultant Gastroenterologist at St James’s Hospital and IrSPEN Director Dr Cara Dunne said the lack of a dedicated specialist intestinal rehabilitation unit for adults in Ireland is an anomaly when viewed against Northern Ireland, the UK, across Europe and developed healthcare systems worldwide – all of which have well-dedicated national services for these patients.

“A specialist unit for children was established in 2000 in Our Lady’s Hospital for Sick Children, Crumlin (OLCHC). However, on turning 16 these patients, and others who develop it, have no specialist adult service available.

“The failure to provide these standards for this complex group of patients has clear legal and ethical implications for the HSE, given that it is well proven that specialist units result in vastly reduced morbidity and mortality.”
Dr Dunne said IrSPEN will shortly be submitting a detailed plan to the HSE recommending a dedicated eight bed specialist unit at St James’s Hospital, supported by at least two regional hubs.

“The level of funding required to establish the unit at St James’s is relatively modest at under €4 million per annum. However, the net cost would be less due to an offset of savings in emergency admissions and long-term treatment costs.”

The drive for a dedicated service was supported by patients living with the condition. Donegal-based Sorcha
McElchar (23), who has lived with intestinal failure since she was a child, said a specialist unit would make a huge difference to her.

“In Crumlin the doctors and nurses knew my case very well and I was able to quickly get the expert care I needed. However, since I turned 16 I am dealing with many different people in different services and this has resulted in recurring infections and illness, which are largely avoidable.”

Kildare-based Alan Behan (28) has been experiencing intestinal failure for the past two years and is attending abroad for some of his treatment. “Every time I have a problem, I have to go to the emergency department. There can be a long wait and often I have to go back over my whole case and history from the very start again with different medical staff. It is both frustrating and also very risky. A dedicated unit would reduce infections and complications, which have a major effect on my life.”

Intestinal failure can happen as a result of the removal of the small intestine due to injury, surgery, blood clots, or ongoing digestive disorders such as Crohn’s disease. A 2016 survey of patients found an alarmingly high rate of complications in Ireland. It also found this cohort of patients being discharged from at least 21 different hospitals, none of which had the training, resources or specialist experience to meet international standards for intestinal failure care.

IrSPEN President and Consultant Gastrointestinal Surgeon Prof John Reynolds said the lack of this service is resulting in excessive illness, suffering, and mortality.

“Treatment in a specialist unit has been shown to dramatically improve morbidity and mortality from intestinal failure. Using international comparisons it is estimated that at least 12 avoidable deaths could be spared per year in Ireland as a result specialist care, though I would say that the figure is even higher. Our health service has a responsibility to deliver this service to our patients.”

Other topics covered at the conference Repositioning Nutrition in Healthcare, which took place on April 27 and 28, included: